title: Medical interventions for children with trisomy 13 and trisomy 18: what is the value of a short disabled life?
abstract: Children with trisomy 13 and trisomy 18 (T13 or T18) have low survival rates, and survivors have significant disabilities. Life saving interventions (LSIs) are generally not recommended by many healthcare providers (HCPs). After a diagnosis of T13 or T18, many parents chose termination of pregnancy or comfort care at birth, but others consider treatment to prolong the lives of their children. While LSIs may be effective at prolonging the life of some children, the quality of life of survivors and the possible burden on the family may be considered negatively by HCP, which may lead to conflicts with families. Resource allocation considerations are often invoked to withhold LSI for T13 or T18 even though they are seldom mentioned for older patients with comparable outcomes.
  
  
  CONCLUSIONS
  We should strive to improve communication with parents by 1. Investigating these conditions further to be able to better inform parents and 2. Providing balanced information for families and personalised care for each child.
authors.affiliation: Department of Pediatrics and Clinical Ethics, Neonatology and Clinical Ethics, Sainte-Justine Hospital, University of Montreal, Montreal, QC, Canada. anniejanvier@hotmail.com, annie.janvier.hsj@ssss.gouv.qc.ca.
authors.forename: Annie
authors.initials: A
authors.lastname: Janvier
authors.forename: Andrew
authors.initials: A
authors.lastname: Watkins
mesh_terms: D000328:Adult; D001291:Attitude of Health Personnel; D025063:Chromosome Disorders; D002882:Chromosomes, Human, Pair 13; D002887:Chromosomes, Human, Pair 18; D006801:Humans; D007231:Infant, Newborn; D016487:Parenting / Q000523:psychology; D057285:Precision Medicine; D011788:Quality of Life; D040841:Resource Allocation; D013727:Terminal Care / Q000941:ethics* / Q000523:psychology; D014314:Trisomy; D000073839:Trisomy 13 Syndrome; D000073842:Trisomy 18 Syndrome; D026712:Value of Life
keywords: Disability; End of life decisions; Ethics; Futility; Informed consent; Intensive care; Life sustaining interventions; Resource allocation; Trisomy 13; Trisomy 18; Withhold and withdraw intensive care